Intro

I live in a creative community that inspires me. With my family and friends, I create...memories.

Friday, March 10, 2017

Trump and Mutation

Six Lessons I've Learned to Carry On

Since the inauguration of President Donald Trump just 50 days ago, I have felt a strange empathy for friends, family, and even strangers. Unwittingly, they have entered a space I’ve inhabited for the past five years, and I have a new kinship of spirit where for years I’ve felt many emotions alone. I’m sorry to see this fold grow, because it’s not created in the successes and progress of life. But it can produce a progress of spirit, a closeness of community, and a re-purposing of focus. For weeks, I’ve wanted to connect the emergence of disbelief, grief, questioning, and outrage with our family’s rare disease experience to draw lines around this commonality of spirit and to provide some hope.

Watching my friends in the weeks following Donald Trump’s inauguration, I have been reminded of a time in our lives that most people didn’t intimately share with us -- that time after Hannah’s diagnosis. My most important story is not about politics, but it is a narrative that is always seeking redemption, lives well lived, and an ultimate future free from pain.

I suffered from depression after my first child was born, and I struggled throughout his infancy. After a long and unproductive labor, I had a caesarean section, and I was disappointed in my delivery. Things did not go as I had planned. When our son was three, our daughter Hannah was born, and I experienced redemption. Her birth was a successful VBAC, and it seemed that all the wrongs were being righted. My isolation and loneliness with my son were corrected by being a part of the MOMS Club of East Nashville, and little Hannah revealed herself to be kind and generous and remarkably strong and outgoing. She was growing just like a weed, and her brother was also growing like a weed and was as smart as a whip, and about five years into this parenting thing, our fortunes had finally turned around. There was a new era of hope in our family.

Our CCHS International Community

Then, suddenly, in August of 2011, Hannah collapsed with total respiratory failure. She was diagnosed a month later with CCHS (congenital central hypoventilation syndrome). The sense that this can’t really be reality and the sorrowful, overwhelmed feelings that many Americans are feeling right now? I shared these emotions! And I still do. I’m writing this because I want you to know that there are amazing ways to carry on. There’s amazing work to be done in the world. All of the gifts that you have can be put to new and different uses, regardless of your circumstances.

As you will see and are experiencing, your priorities shift, and your way of being can fundamentally change, and that is not necessarily bad for most of you. For our Hannah, it’s been painful. For immigrants who are being turned away at our borders, it’s heartbreaking. For people who are being or will be denied health care, these changes are a terrible thing. I have no counter to that -- it’s just awful. But for you who are reeling now and sorrowful and shocked and hurt and can’t believe that this is the America you live in, perhaps the hard-won insights that my family and I have gained over the past five years since diagnosis can help you.

1. Be a Vocal Advocate. Be a Truthful Advocate.

I really cannot tell you the number of times I have had to advocate for Hannah. The example that always sticks out in my mind is cursing at a doctor in the local ICU who claimed he’d seen many patients with Hannah’s rare condition -- a boldfaced LIE. I screamed, “Bullshit!” at him, and he calmly said to me, “Ma’am, we don’t speak that way in the ICU.” He thought he was putting me in my place, but he deserved to have bullshit called on him.

Near Trump Hotel on Pennsylvania Avenue in DC.

There are junctures for an aggressive response (as when a delicate life hangs in the balance and fabricating the experience to lead only increases the threat), but usually, coming to the table with the powers that be -- doctors, insurance, equipment providers, etc. -- with a finely crafted, often finance-based argument for my position, has been the best way to advocate for my daughter. Speaking the technical language of the other party and focusing on their bread and butter may be the best way for us to move forward as a country. Your adversaries place little value on your emotions. They want to maintain or gain -- power, resources, and prestige.

2. Shift Your Priorities

Suddenly things that seemed important in the past, past goals that were ingrained in you, seem unworthy of your time and attention. Having the nicest, fanciest house is less important than having a safe place to come to when we’ve been released from a stay in the ICU and slept on a fold-out chair or haven’t slept at all because the hospital staff don’t really know how to take care of our child, so we have to stay up all night to do it ourselves. Simply having a soft bed to sleep in, your family around you, and independence of action become so much more valuable than accumulating things and making them shine.

When you’ve been protesting all day -- as many of you already have, when you’ve safeguarded the oppressed, and when you’ve volunteered or worked challenging jobs in public education or community health, for instance, you understand what I mean. Your individual blessings seem to flower before you, and your unmet “needs” diminish.

Women's March on Washington, 1/21/17.

Likewise, meeting personal and professional goals may become less important than advocating for others and making the world a better place. Envisioning our children’s futures has already realigned many of us, but under the previous Administration, we might have taken for granted that their futures were going to be great -- filled with compassion and kindness and mercy to their fellow man...now, we’re not so sure anymore. Putting your children’s futures ahead of your own is a powerful motivator, and it will push you to do remarkable things.

3. Streamline & Specialize Your Efforts

Research, whether medical or political, is a rabbit hole and can provide both a pathway forward and the absence of hope. To combat this, it helps to focus on your piece of the puzzle. For our family, the research focus for Hannah has been non-invasive ventilation and CO2 monitoring. Others might study sudden cardiac pauses and the need for pacemakers. All of our research and inquiry helps everyone with her condition, but everyone need not become an expert on every topic or every solution. We can share what we’ve learned with one another to make many roads smoother. Find where your interest lies and do in-depth research and solid work in that area. You can help others advocate for their areas of specialization without immersing yourself, as they can you. Offer to support and ask for support.

8th Annual Valentine's Dance

Walk away from the technology and really connect to the people for whom you’re advocating. That will inspire your efforts and give you real meaning and purpose, more than just endlessly reading other people’s words and experiences. There are a lifetime of problems available for your consumption online, but you will not do your best work there. Your work is in phone calls, letters, personal visits, face-to-face conversations, showing up on the most important dates, and using your voice when the going gets tough. To do those things effectively, you need to focus.

So, sign all the petitions online against all the things that hurt your spirit, but use what is unique about you to do your good work in the world. For instance, I can connect people and raise money. I can do this in both the political and medical arenas. If I’m not spending my limited time doing this, then I’m not serving my cause well. And while I’m advocating for healthcare for all sick children, I’ve been specifically called to the CCHS/rare disease battle.

4. Take Care of Yourself

As a special needs mom, so many people tell me, “You need to take care of yourself,” and they are right! Sometimes, that means I need to be alone to regroup -- to read or to sit in silence, and sometimes that means I need to spend some time with other people. Quite often, it means I need to be with my family, because they are the ones who inspire me, and I should prioritize them. Almost always, I need to give greater attention to my relationships with my spouse and my parents and brother because those are foundational people who, no matter what happens, will be there for me, and making those people a priority gives me the energy to go out to work in the world and to be a better advocate for my daughter.

East Tennessee

Very often, taking care of myself means reconnecting with nature to see that all of these systems, these illnesses, these situations that we create as wounded human beings are small in the perspective of the whole world. That raises the spirits to carry on. I’m terrible at this, but exercising and taking care of the physical body are essential to take care of others.

Turning off the chatter and the worries from time to time is necessary. There are periods when I need to nearly forget we have a genetic disorder in the house and just enjoy the basic beauties of life. You need this, too; you need to forget about the White House sometimes to restore your mind. Don’t forget that "you have to put your oxygen mask on first before you can help others," as I ruefully remember sometimes when I’m putting on my daughter’s breathing mask at night.

5. Don’t Worry What Others Think

Understand that some people are just never going to get your perspective. People have told us that if we prayed harder, our daughter would be healed of her random incurable genetic mutation. That’s like telling the parent of a child with Down’s Syndrome that if they prayed hard enough, the child would miraculously not have Down’s anymore. Our situation calls for something other than expecting physical healing (perhaps rather an interior healing of pride or the need for perfection in other human beings).

Many people can not accept this diagnosis because it goes against their core sense of “prosperity gospel,” the idea that if you do things right, good things will come to you. There’s no basis for that in history or our Constitution, and if you’re a Christian, that’s really the opposite of the story of the Bible. The Bible says that you should expect suffering if you’re standing up for what’s right, because there is hate in the world, and much like our genetic disorder, it’s never going to go away. You will not be able to reconcile your strong emotions, beliefs, and values with some people, especially if you diverge on religious grounds, and that’s just part of the diversity of being. Be true to yourself, and acting out of compassion, carry on.

You will find that some people around you are a lot greedier than you expected. They are not going to come to your aid when you need it to defend you or assist you or others. They’re going to think first and foremost about themselves, and that might surprise you. It’s heart rending, but you’ll know which relationships you need to pursue, and you can free yourself from unnecessary energy while praying for those who have a hard heart towards the unbidden, unexpected, undeserved pain and suffering of others.

ICU, Winter 2016

Here is the sad reality: we can’t eliminate hate in the world any more than I can eliminate my daughter’s genetic mutation. But, we can change our response to it, and we can control how we speak to others and how we get other people on board to care for and about the urgent situations we face and the hurt that we can help.

6. Perseverance Lies Within

When I look back over the past five and a half years, I can’t believe my family has made it here in one piece. While I’ve aged more rapidly over that time, we’re actually doing okay; we’re a fairly typically functioning family. We will admit that we are perennially exhausted. When our girl is sick or we’re waging a battle for her, we are fully engaged and replete with energy for the task. When those times pass, we need a period to recuperate, but we must always be vigilant and alert.

John Oliver was a guest on Stephen Colbert’s late night show a month ago, and he said of engaging with the Trump administration, "It's exhausting. It feels like Inauguration Day was 114 years ago. We have a long way to go. It's going to be hard. It's easy to be angry on adrenaline, but it's much, much harder when you are just tired, and this is going to be exhausting." Take moments to rest, but stay alert, and keep showing up; strength comes when most needed.

There are definitely times when you want to run away. You want to hide your head under the covers, or you want to escape. You simply can’t do that. You have to stay. You have been called to this time, and you can’t opt out now. The fight is too big. It’s true of me, and it’s true of my husband, and I can’t imagine that any parent in our situation hasn’t just wanted to run away or thought, “You know what? Maybe they’d do it better without me.” That’s absolutely untrue. If you’re reading this, this situation is NOT going to get better without you. You have a very big role to play, and you are being called to this moment to play it. The time that you spend fighting for a better world and serving others will only increase in value as years pass.

Photo Credit: Hannah B at her 1st Protest.

I will turn 40 in a few months, and it can’t come fast enough. I feel tired and experienced in my bones, and it seems like my age needs to catch up, like a badge I’ve already earned. No one wants to look back on her life and think it a waste. In today’s world, it needn’t be.

Here’s where we converge in spirit: we didn’t deserve this, and it’s nothing anyone could have expected. We did all the right things, yet forces outside our control handed us a lifelong struggle.

Am I bitter? Yes. Am I afraid? All the time. Is it essential that I overcome those things and move on with outstretched arms and an open heart? Absolutely. Let’s do it together. If the past five years have taught us anything, we have learned that we can’t do it alone, but even in unwelcome circumstances, there is beauty and joy when we fight on together.

I hope this has inspired you to see ways to do that and to know regardless of the situation that you CAN stay and you CAN fight. There is so much beauty in the fight, and you will grow SO MUCH, and you do not have to be thankful for the struggle, but you will be grateful for what you did to win the ultimate victory. Don’t forget...unlike a genetic mutation, this unexpected challenge can be reversed. Carry on!